Why am I fearful?

Over the summer holidays, Jude became more and more willing to go out and about as a family. He even came clothes shopping with us one day which for the past several months is literally unheard of!

Sometimes he’s awesome, like I could just hang out with him all day because he’s so chilled, relaxed, funny, responsive. He’s almost as I’d imagine him if he didn’t have learning disabilities. I love these times. I feel we connect so well. Jude can be the funniest kid ever with his unexpected one liners and quick witted responses. He’s really smart! We’ll lie on the couch together and chat or if we’re in town then we can go for a drink in a cafe, wander around the shops, go and say hello to people we know in various shops. No-one bats an eyelid because Jude blends in. I feel like I do when I’m out with the girls. We’re part of society.

Other times, I can’t get back home quick enough. We are definitely NOT part of society. Rather, we’re in a hamster wheel, running through a place we really don’t belong, in our own little bubble.

Maybe this is because of me and my particular mood on these occasions. I work a lot so often get very tired; mentally and physically drained from a long week working all hours. That can’t help.

Other times, I can sense a melt down bubbling away under the surface of Jude’s skin. Everything agitating him. He’ll do that annoying thing where he says he wants something and then he doesn’t. He wants to go up the stairs but then he won’t move. I feel a bit terrified during these times. We’ve had too many hair raising experiences in town to be naive to the potential of a situation. Jude loves our local Waitrose because it has a lift that he likes to go up and down in. Sadly, Waitrose people aren’t typically “Jude” people. We’ve discovered this from experience so whenever we enter the building, I instinctively break out into a slight sweat. Who the hell will we meet today? Hopefully not the old lady who decided to suggest that maybe Jude just needs a bit of love when he was mid-melt down on the floor. Thanks lady…yep, must remember to actually love my son. Cheers! Or those people who stare at Jude when he’s doing something flappy with his hands or he’s saying really random things, or he’s talking to everyone within a five metre radius.

“What’s your name?”

“Are you going soon?”

“What are you doing?”

All standard Jude opening lines and however the person responds affects my heart rate that little bit more for the next few minutes of my life. On one side of the fence, we’ve had people ignore him or look at him like he’s some sort of weirdo. And on the other side, those who engage and on once occasion a lady who sat down and had a full on ten minute chat with him. The latter helps ease my anxieties. Acceptance. Who doesn’t want their child to be accepted within their own environment. The former just make me think, well they were probably too boring to answer Jude’s awesome questions of “where’s your car?” or “What are you having for dinner?”

Jude and his favourite set of automatic doors. He stood here opening the door for everyone entering and leaving!!

Why do I care so much?

When we go out, I consciously look around all the time, seeing if we are surrounded by friend or foe. I think all our bad experiences have really affected me. We’ve had too many. They’re the experiences that mostly stay with me.

Saying that. I’ll never forget the amazing lady with the bright pink hair who Jude approached in an art shop once (I was brave enough taking him in there with all the stuff on display!) I was down one of the aisles and had told Jude to just sit on this chair by the checkout whilst I helped Elsa choose a birthday present for someone. That was when I heard Jude talking and the fear kicked in…oh no, who has he commandeered? Please be a nice person, please be a nice person.

I looked around the corner and this lady had taken the seat next to Jude so she could have a little chat. He asked his favourite question at the time, “is your car hot?” and rather than say “what are you talking about?” as other’s may have done, she simply said, “yeah I think it probably is. It’s very sunny today.” What really threw Jude into a spiral of excitement was that this lady not only answered his random questions but requited with her own questions too. His face was a picture! I eventually tore Jude away from his new best friend and thanked her profusely for entertaining him. She was so lovely and my heart rate was at a steady normal during this scenario.

So why am I fearful?

I think it’s a combination of bad experience from morons in the community who think it’s ok to point, laugh, talk about and isolate Jude from society. That hurts so much. As well as experience of Jude’s melt downs reaching a point where he looks like something from Poltergeist. No-one needs to see that and now he’s so big, I can’t cope with it in public. I can’t stop him hurting himself when he’s flailing or even hurting me.

I think I just need more pink haired ladies when we’re out and about. Focus on the positive and the love.